COVID travel restrictions eased globally
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Pharming Group N.V. announces the topline results from two randomized, open label, controlled, pilot clinical trials of patients hospitalized with COVID-19 treated with Ruconest (recombinant human C1 inhibitor) for the prevention of severe SARS-CoV-2 infection. The primary endpoint in both studies was disease severity on the 7-point WHO ordinal scale on Day 7. In the [...]
COVID-19 and HAE The health and well-being of our global community is HAEi’s top priority and in this section of our website you will find information from HAEi and our medical experts about COVID-19 and issues especially relevant for people who have HAE. Find a [...]
“Have no fear. Take the vaccine.” That is, in short, the main message from HAEi’s Chief Medical Advisor Prof. Marcus Maurer, during an interview with HAEi’s President and CEO Tony Castaldo. Prof. Maurer says that there are no medical or scientific concerns preventing people with HAE from getting the COVID-19 vaccine. HAEi recommends that [...]
The first patient has been enrolled in a randomised, open label, parallel group, controlled, pilot clinical trial in up to 120 patients hospitalized with confirmed COVID-19 treated with Ruconest (recombinant human C1 inhibitor) for the prevention of severe SARS-CoV-2 infections at the Valley Hospital in Ridgewood, New Jersey in the United States. Initially based at [...]
In its annual R&D briefing to investors CSL Limited demonstrates how the company is advancing a novel research portfolio across four strategic scientific platforms (Plasma Fractionation, Recombinant Technology, Cell and Gene Therapy, Adjuvanted Cell and Egg-based Vaccines) across six therapeutic areas (Immunology, Hematology, Respiratory, Cardiovascular and Metabolic, Transplant, Influenza Vaccines) and two businesses (CSL Behring [...]
IONIS-PKK-LRx from Ionis Pharmaceuticals, Inc. is being evaluated in an investigator-initiated Phase 2 clinical study to determine its effectiveness in reducing the severity of respiratory complications in patients with COVID-19. The trial coordinators are Fernando G. Zampieri, M.D., Ph.D., and Alexandre Biasi Cavalcanti, M.D., Hospital do Coracao (HCor Research Institute), Sao Paulo, Brazil. The study [...]
Pharming Group N.V. announces the publication of data in the peer-reviewed journal, Frontiers in Immunology, from a compassionate use programme of five patients with confirmed COVID-19 (SARS-CoV-2) infections hospitalized with related severe pneumonia that were treated with Ruconest (recombinant human C1 inhibitor, conestat alfa) at the University Hospital Basel, Switzerland. As reported on 21 April [...]
The first patient has been enrolled in a randomized, controlled, investigator-initiated clinical trial in up to 150 patients for the treatment with Ruconest (recombinant human C1 inhibitor) of patients with confirmed COVID-19 (SARS-CoV-2) infections hospitalised with related severe pneumonia at the University Hospital Basel in Basel, Switzerland. In April 2020, Pharming Group N.V. reported encouraging results [...]
Together with the COVID R&D Alliance partners AbbVie, Inc. and Amgen Inc., Takeda Pharmaceutical Co. Ltd. has enrolled the first patients in the I-SPY COVID Trial (Investigation of Serial Studies to Predict Your COVID Therapeutic Response with Biomarker Integration and Adaptive Learning) clinical trial. The trial will evaluate the efficacy of a chemokine dual-receptor antagonist, a PDE4 [...]
CSL Behring has enrolled the first patient in its Phase 2 study to assess the safety and efficacy of CSL312 (garadacimab, Factor XIIa antagonist monoclonal antibody) to treat patients suffering from severe respiratory distress, a leading cause of death in patients with COVID-19 related pneumonia. In this multicenter, double-blind, placebo-controlled study, approximately 124 adult patients [...]
Pharming Group N.V. sees encouraging results from five patients with confirmed COVID-19 infections hospitalized with related severe pneumonia that were treated with Ruconest (recombinant human C1 inhibitor) under a compassionate use program at the University Hospital Basel, Switzerland. Four male patients and one female patient (between 53-85 years of age) with COVID-19 and suffering from [...]
HAEi has recorded a Q&A about COVID-19 and HAE as part of our commitment to providing the global community with useful information during the pandemic. The video features HAEi Chief Medical Advisor, Prof. Marcus Maurer from Charité University Hospital in Berlin, who responds to questions from HAEi President and CEO, Tony Castaldo. Please feel [...]
At HAEi we do not only care deeply about your physical health, but also that you and your family can maintain your mental health during these challenging times. Therefore, we have created this infographic that we hope you will find useful. Maintain social distancing, take care of your mental health, and stay safe! Your HAEi [...]
BioCryst Pharmaceuticals, Inc. has opened enrollment into a randomized, double-blind, placebo-controlled clinical trial to assess the safety, clinical impact and antiviral effects of galidesivir in patients with COVID-19. The trial is being funded by the National Institute of Allergy and Infectious Diseases (NIAID), part of the National Institutes of Health. Galidesivir is an investigational broad-spectrum [...]
A friendly reminder from Your HAEi Team HAE International cares deeply about the health and well-being of you and your family as we all are confronted with the COVID-19 (novel coronavirus) pandemic. Therefore, we have created this reminder with recommendations for protecting yourself and others from getting infected. Maintain social distancing, take care, and stay [...]
“The Phase 2 clinical trial for KVD900 as an on-demand oral therapy for HAE attacks remains active, but we anticipate a delay in timing of data due to the unprecedented worldwide impact of COVID-19”, says Andrew Crockett, CEO of KalVista Pharmaceuticals, Inc.: “A number of our participating physicians and clinical sites have shifted their focus [...]
Partnership brings together world-leading plasma companies to focus on developing and delivering a hyperimmune immunoglobulin in the global fight against COVID-19 Biotest, BPL, LFB, and Octapharma have joined an alliance formed by CSL Behring and Takeda Pharmaceutical Company Limited to develop a potential plasma-derived therapy for treating COVID-19. The alliance will begin immediately with the [...]
Dear HAEi Friends, The health and well-being of our global community is HAEi’s top priority. With that in mind, we asked our medical experts to provide their best thinking regarding the COVID-19 virus health risks that might be faced by people who have hereditary angioedema and other forms of recurrent angioedema. COVID-19 is a [...]
The HAE International team continues to meet around the clock and carefully monitor the developing global situation regarding the COVID-19 (novel coronavirus), which now includes the declaration of a pandemic by the World Health Organization. We understand and share the concerns we are hearing from conference participants regarding travel and public gatherings. HAEi fully understands [...]
As mentioned in the previous communication of 27 February 2020, HAE International is carefully monitoring the developing global situation regarding COVID-19 (novel coronavirus) to the extent that it could affect our upcoming 2020 HAE Global Conference in Frankfurt. The health and well-being of everyone in the HAE community is of paramount importance to us, which is why we [...]
HAE International is carefully monitoring the situation regarding the COVID-19 virus to the extent that it could affect our upcoming meetings and conferences. This includes: 2020 HAEi Regional Workshop North Africa in Algeria, 6-8 March 2020 2020 HAEi Regional Workshop Asia Pacific in Singapore, 17-19 April 2020 2020 HAE Global Conference in Frankfurt, Germany, [...]
From Michelle Cooper and Daphne Dumbrille, HAE Canada Spring 2024 has been exciting here at HAE Canada! As we mentioned in our last update, we started 2024 by working on our next Five-Year Strategic Plan. Board members and staff met in person and virtually in Ottawa in early May for our annual Board Retreat, [...]
We asked ACARE centers from our Asia Pacific, Americas, and EMEA regions to tell us a little about their journey. This time, ACARE Answers is focused on the Americas region. The ACARE centers and experts answering the questions are from Canada, Ecuador, and Peru. Questions answered by Dr. Adil Adatia, Clinical Immunology and [...]
From Michelle Cooper (HAEC President and Ontario Regional Director), Jacquie Badiou, (Past President), and Daphne Dumbrille (COO), HAE Canada In October, HAE Canada President, Michelle Cooper, along with COO, Daphne Dumbrille, were given the opportunity to attend BioCryst’s first annual Patient Community Open House at their Discovery Center of Excellence Labs in Birmingham, Alabama. [...]
At the recent 2023 HAEi Regional Conference EMEA, we got to sit down with HAEi Leadership (from left), Henrik Balle Boysen, Tony Castaldo, Fiona Wardman, and Jørn Schultz-Boysen. We spoke to them about their passion for advocacy and their hopes and fears for the future. HAEi Leadership Roundtable Interview: Advocacy is Proactivity Let’s start [...]
From Michelle Cooper, President, Jacquie Badiou, Past President, and Daphne Dumbrille, COO, HAE Canada A few years ago, HAE Canada’s Past President, Jacquie Badiou, realized that HAEC would benefit from gaining accreditation from Imagine Canada, a national organization that helps not-for-profits become and remain effective, accountable, and productive. Since then, she, along with past [...]
Co-chair Welcome, Saturday Morning Opening the Scientific Track, the Co-Chairs of the Scientific Committee, Prof. Henriette Farkas, Prof. Petra Staubach-Renz, and Dr. Danny Cohn, welcomed the more than 120 attending healthcare professionals from all across the region, from Algeria and Armenia to Ukraine and Zimbabwe. The Young Researcher/Investigator Award was presented to Dr. [...]
From HAE Canada The first event of the year was the 2023 American Academy of Allergy, Asthma & Immunology (AAAAI) Annual Meeting in San Antonio, Texas, United States. Thank you to Suzanne Kelly of Red Maple Trials, who presented the HAE Canada poster on our behalf, titled “Emergency room visits by patients with HAE [...]
From Regional Patient Advocate Jørn Schultz-Boysen In late March, I had the pleasure of presenting at the yearly Finnish patient meeting. It was the first in-person meeting in Finland after the COVID-19 outbreak.
From Executive Officer Rachel Annals, HAE UK We have had a busy few months including arranging our next patient day; Saturday 20 May. Patients and their families as well as HAE professionals will join us to hear the latest news relevant to the UK, to meet with the team and other HAE friends. The Rt [...]
From President Gökben Yurdakul, HAE Turkey In response to the challenges posed by the COVID-19 pandemic, HAE Turkey took action to provide support for patients and their families. We held information meetings with doctors in a region where adult and pediatric patients were the focus, sharing their struggles and working together to develop solutions. They [...]
From HAE Canada As the season ends, we must start with the most impactful event from fall 2022: the 2022 HAEi Global Leadership Workshop in Frankfurt, Germany. We’d like to deeply thank the HAEi team for giving HAE Canada’s leadership the opportunity to participate in such a worthwhile experience. HAEi did a phenomenal job [...]
From President Beverley Yamamoto, HAE Japan We have seen great improvement in the treatment environment in Japan over the last two years, and in September the third long term prophylactic treatment was approved by the PMDA. Since last reporting to Global Perspectives, we have also seen the indications for use of Icatibant expanded to [...]
Hi everyone, It’s hard to believe we are already getting close to celebrating a New Year! Before we talk about our plans for 2023, however, let’s reflect on the great things that happened throughout 2022. We kicked the year off with so many goals that even the Youngsters’ Community Coordinator, Nevena Tsutsumanova, thought we [...]
The first HAEi Global Leadership Workshop held in October brought HAE Member Organization leaders, the global HAE scientific community, and the pharmaceutical industry together for the first time in over four and a half years. “As the first event of its kind, we are very interested in our Member Organizations’ evaluation of the meeting,” [...]
From Regional Patient Advocate Jørn Schultz-Boysen The primary objective for the last three months was the 2022 HAEi Global Leadership Workshop in Frankfurt, Germany. September with the preparations, October with the actual workshop, and then the follow-up. The workshop itself was a very successful event – not only for HAEi but certainly also for [...]
General Program Saturday morning, all participants were together again for the second day of the workshop, which offered a variety of highly relevant and informative topics. HAE Primer: 12 Things You Should Know about HAE The first item on the agenda was covered by the Scientific Program Co-Chairs: Prof. Zuraw, Prof. Bork, and Prof. [...]
From CEO Fiona Wardman, HAE Australasia HAE Australasia is proud of the collaboration with HAEi on the Elizabeth Macarthur Virtual Angioedema Centre (EMVAC). The idea of a virtual center came from Professor Connie Katelaris to overcome the challenge of patients being unable to access specialist HAE medical advice and support due to the vast [...]
HAE Puerto Rico has held its annual conference where HAE specialist doctors had the opportunity to talk about topics such as new treatments, research, and COVID-19 vs. HAE. The main speaker and special guest was Dr. Marc Riedl from the US HAEA Angioedema Center. Among the other speakers were Dr. Anardi Agosto, President of the [...]
From Regional Patient Advocate Javier Santana The patient group in Puerto Rico has held its annual conference where HAE specialist doctors had the opportunity to talk about topics like new treatments, research, and COVID-19 vs. HAE. As a representative of HAEi, I gave a presentation on advocacy and the process of getting HAE medicines [...]
From COO Daphne Dumbrille and President Jacquie Badiou, HAE Canada: Exciting news: Canadian HAE patients are one step closer to gaining access to the first oral HAE treatment. Health Canada has recently approved BioCryst’s treatment, ORLADEYO® (berotralstat), for the routine prevention of HAE attacks in patients 12 years and older. HAE Canada will continue [...]
After trying multiple medications and finding the one that works for her, Pravalika Meduthuri from India started doing all the things she love. She has a lot of hobbies now, and like the fact that she's able to keep up with her activities as things are nowadays.
From Regional Patient Advocate Javier Santana In April, a follow-up was given to the survey that HAEi designed for my region in Spanish. The survey will help gather important information on the current situation related to HAE. All group leaders from the countries of the region participated in the survey. Chile held a virtual [...]
From HAE Canada Our first big piece of news to share is that the HAE Canada team has blossomed to eight Board of Director members. At the 2021 Annual General Meeting on 7 December, we thanked our outgoing Board members, and welcomed our new Board members who will bring their own expertise to the [...]
From CEO Angela Metcalfe Well, it’s been a busy few months since I took over as the CEO of HAE UK! We have lots and lots of ideas going forward and a few exciting projects that we are hoping to get off the ground in the next few months. One project that has [...]
By Nanna Boysen and Victoria Schultz-Boysen, board members of HAE Scandinavia HAE Scandinavia celebrated its 20th anniversary on 12-14 November 2021 in Copenhagen, Denmark. Considering the global COVID-19 challenges, we are beyond grateful that patients, caregivers, physicians, and pharma companies could get together again. Not only did HAE Scandinavia celebrate its first two decades [...]
Early in the pandemic, HAE patient Scott McCoy described his encounter with COVID-19 in a webinar for US HAEA. It was a bad news-good news story. The bad news was that McCoy had become infected with the novel coronavirus prior to vaccines being available. But the good news was that his infection did not cause [...]
From President Jacquie Badiou and COO Daphne Dumbrille, HAE Canada This fall HAE Canada hit the ground running. Our first task of the season was to present our poster titled, “Hereditary angioedema in Canada: Changes in medication use and untreated attacks between the 2017 and 2020 surveys” at the Canadian Society of Allergy and [...]
From President Gökben Yurdakul, HAE Turkey We are so happy to be here and share our accomplishments with you. During the COVID-19 pandemic, we have held a number of online meetings with our patients and their relatives. This has been done in order to gather information about COVID-19 infected people’s troubles and concerns. Also, we [...]
From Regional Patient Advocate Maria Ferron I have been advising all the member organizations in my region about the new Advocacy Academy courses developed by HAEi. This is an excellent opportunity for national organizations to take advantage of this wonderful tool to learn how to run an organization and advocate for patients. Please don’t [...]
From Regional Patient Advocate Javier Santana Thanks to the cooperation with the consulting doctors of the patient groups in the Central American region, new doctors from Honduras and Nicaragua have been contacted. In both countries, patients with HAE have been identified, and the necessary efforts are being made to help them understand the disease, [...]
From Regional Patient Advocate Natasa Angjeleska In October, I was focused on stirring up the countries’ interest in HAEi resources. I invited patient representatives to a member organization online meeting for my region, where we had an opportunity to discuss the situation regarding access to therapies, new initiatives, challenges etc. in the past period. [...]
By Anthony J. Castaldo, HAEi President & CEO Access to modern HAE medicines is the key to improving our community’s quality of life. HAEi’s experience working with member organizations shows that having robust and reliable real-world data is a key component winning approval for a therapy. HAEi conducts targeted, scientific based research designed to [...]
From CEO Laura Szutowicz, HAE UK: Over the summer, the UK has seen some changes as the COVID-19 vaccine rollout gathered pace and the weather improved. Children have gone back to school after the holidays, and many members are taking up the reins of life before the pandemic. HAE UK is also seeing some [...]
From CEO Fiona Wardman, HAE Australasia: HAE Australasia is excited that the Pharmaceuticals Benefit Advisory Committee in Australia has recommended lanadelumab be listed on the pharmaceuticals benefits scheme (PBS), making this treatment available to patients in Australia. We look forward to this treatment being officially listed towards the end of the year. HAE Australasia [...]
From President Jacquie Badiou and COO Daphne Dumbrille, HAE Cananda: Over the summer, we received the news that our abstract titled “Hereditary angioedema in Canada: Changes in medication use and untreated attacks between the 2017 and 2020 surveys” was accepted to the Canadian Society of Allergy and Clinical Immunology (CSACI)’s Annual 2021 Scientific Virtual [...]
From Ianice Viel, Digital & Social Media Manager, US HAEA: 2021 US HAEA Virtual Summit Series: In light of the COVID-19 restrictions, the HAEA reimagined and designed an innovative alternative to the in-person Summits we had held every other year over the past two decades. The 2021 US HAEA Virtual Summit featured four live [...]
Getting back to school year routine is always a challenge after enjoying the summer months. However, for many, this fall will be the first time back in school for full days, five days a week, since March 2020. In-person school is therefore likely to be a distant memory. On top of that, COVID-19 related [...]
Plasma helps your body fight diseases, and it deserves greater recognition. Ask people who have certain rare and chronic complex diseases – they will tell you that therapies made from donated plasma help them manage conditions such as immunodeficiency disorders, hemophilia, and HAE. Plasma is a core substance within our blood and carries important cells, [...]
I have informed the patient representatives in my region about the HAE TrackR app and sent them the files for translation. So far, we have the app translated into Serbian and Turkish – and expect to have it available in Macedonian very soon. HAE Greece has received its registration documents and is now an [...]
This input is dated May 2021 In brief Name for organization: US Hereditary Angioedema Association 10,000 members at 1 Jan 2021 Name of approved HAE treatments: Berinert Cinryze Firazyr Haegarda Kalbitor Orladeyo Ruconest Takhzyro Fun/interesting facts The United States has the fourth longest river system in the world. [...]
This input is dated May 2021 >> View content in Español In brief Name for organization: US Hereditary Angioedema Association 10,000 members in total at 1 Jan 2021 (the association registration is pending), 103 members in Puerto Rico Name of approved HAE treatments: Berinert Cinryze Firazyr Kalbitor Ruconest Takhzyro [...]
At the EAACI Hybrid Congress 2021, BioCryst Pharmaceuticals, Inc. announced that HAE patients who were randomized to receive 150 mg of oral, once-daily Orladeyo® (berotralstat) at the start of the APeX-2 trial had an 80 percent average reduction in their mean attack rate per month during weeks 25-96 of the trial, compared to baseline. Median attack [...]
This input is dated May 2021 >> View content in Türkçe In brief Name for organization: Hereditary Angioedema Patients Solidarity and Support Association – HAE Turkey 60 members at 1 Jan 2021 Name of approved HAE treatments: Cinryze Bradikant (generic Firazyr) Icatin (generic Firazyr) Fun/interesting facts Belly [...]
This input is dated May 2021 >> View content in Nederlands In brief Name for organization: Association for Angio Edema 150 members at 1 Jan 2021 Name of approved HAE treatments: Any treatment is allowed Fun/interesting facts A unique network of general practitioners Storm surge barrier (Delta works) Windmills [...]
From Chairman Elena Bezbozhnaya, HAE Russia: In Russia, many restrictions imposed due to the spread of the COVID-19 pandemic have already been lifted. The activities of HAE Russia are gradually returning to the face-to-face format, although many events are still conducted both offline and online. In Spring 2021, we held the fourth International Conference [...]
From Digital & Social Media Manager Ianice Viel, US HAEA: 2021 US HAEA Virtual Summit Series: On 16 May 2021, the US HAEA launched its first ever US HAEA Virtual Summit Series. The Virtual Summit Series is being presented in one-day sessions through the summer and ends on 8 August. The virtual format combines [...]
From CEO Fiona Wardman, HAE Australasia: HAE Australasia and its members (in Australia) welcomed the news that subcutaneous C1 is now indicated for children aged eight and older. There have been quite a few questions from HAE patients around receiving the COVID-19 vaccinations. HAE Australasia has made available the information from HAEi on this [...]
From President Sarah Smith, AEDAF: For the 10th anniversary of hae day :-), in addition to taking part in the virtual walk around the globe, AEDAF, with the collaboration of Takeda, has produced a documentary titled “Impredecibles” which premiered on 16 May. The protagonists of the documentary are three members of AEDAF, real patients [...]
The biannual HAE Global Conference has been an excellent opportunity for people with HAE to meet, exchange experiences, and learn from each other over the years. Following the 2018 HAE Global Conference in Vienna, Austria, organizing a workshop for fellow Latin American patients was a must. Originally the plan was to hold the first-ever [...]
We are very excited to share with you that we are kick-starting our Blog again! We are so happy to present Pravalika from India. She is amazing, cheerful, and very passionate about photography. This is her story from the HAEi Youngsters Blog: Where are you from? I am Pravalika from India :-) What was [...]
– yet another virtual event Due to the uncertain situation caused by the COVID-19 pandemic, the 12th C1-Inhibitor Deficiency and Angioedema Workshop was held online on 3-6 June 2021. The command center of the workshop was the studio of Diamond Congress, with Professor Henriette Farkas and Senior Research Scientist Lilian Varga once more [...]
Showcasing the work of the 93 member countries and learning a lot of fun and interesting things along the way 341 photos in the gallery to share activities – – visit haeday.org before 1 November 2021 to see them all! Input from the Regional Patient Advocates supporting the regions; both in writing and in [...]
By Michal Rutkowski, Regional Patient Advocate for Central Eastern Europe, Benelux and Middle East It has become a tradition that each year October brings the largest annual gathering for the HAEi community in Central Eastern Europe and Benelux. Part of the tradition is that Poland hosts a yearly regional advocacy event dedicated to patients, [...]
On 6 March 2021, I was able via Zoom to address the participants at the annual patient meeting in Croatia and congratulate them on their engagement and activities even in a COVID year. I held a meeting with the Cyprus patient group on 25 March 2021, during which I introduced the participants to the [...]
This input is dated May 2021 In brief Name for organization: HAE India 70 members at 1 Jan 2021 Name of approved HAE treatments: Tranaxemic acid Danazol Stanozolol Fun/interesting facts Diverse and inclusive. People are more affectionate and helpful towards each other. We can experience all kinds of weather [...]
This input is dated May 2021 >> View content in 한국어 In brief Name for organization: HAE korea 22 members at 1 Jan 2021 Name of approved HAE treatments: Firazyr Prefilled Syringe Fun/interesting facts Korea is the only divided country in the world. Korean men are required to fulfill their [...]
At the presentation of the Takeda Pharmaceutical Company Limited financial results for the fiscal year 2020 (period ended 31 March 2021), President and CEO Christophe Weber says: “Takeda remained resilient as we operated in new ways through the COVID-19 pandemic. We maintained business continuity, ensured patient access to our medicines and safeguarded the health and well-being of [...]
From Ivana Golubović, HAE Serbia 2020 has been a challenging year for our HAE community. Delays in the supply of our medicines, limited access to hospital care, etc. However, it also gave me the impression that rare disease patients mentally handled the COVID-19 situation much better than the rest of our otherwise healthy community. [...]
We made it through 2020 and excited to welcome 2021! Despite dealing with COVID-19 and all that it throws at us, thankfully we have some great achievements to share. Earlier we mentioned that we launched our 2020 National Report Card survey to our membership; we are thrilled to report we had a fantastic participation [...]
HAE Hungary held the first-ever online event on 30 November 2020 with about 20 participants including patients, physicians, and representatives of the pharmaceutical companies Takeda and ExCEEd Orphan representing Pharming. It was a great two-and-a-half-hour meeting. At the first part of the meeting, Zoltan Maros, the Secretary of HAE Hungary talked about the events [...]
From Digital & Social Media Manager Ianice Viel, US HAEA hae day :-) 2021: The US HAEA is excited to announce our plans for the celebration of hae day :-) 2021. We are thrilled to be a part of the HAEi campaign for the 10th anniversary of the global HAE awareness day and all [...]
From Chairman Danail Dimov, HAE Bulgaria The next important goal HAE Bulgaria wants to achieve is to improve the access of HAE patients to plasma protein therapies and in particular to HAE prophylaxis. Our goal is to collaborate more closely with patients’ community, Bulgarian authorities and health care professionals in order to improve the [...]
From CEO Laura Szutowicz, HAE UK Groundhog Day! For those of you not familiar with the expression, the day is 2 February, when the groundhog is said to come out of its hole at the end of hibernation. If the animal sees its shadow – for instance if the weather is sunny – it [...]
The network of ACARE centers continues to grow despite the many challenges created by COVID-19. ACARE is a joint venture with GA²LEN and HAEi that fulfills HAEi’s longstanding goal of establishing a worldwide network of accredited angioedema care centers. In 2020 and 2021, the ACARE Network launched, hosted and aired two webinar series. The [...]
16 May 2021 marks the 10th anniversary of the hae day :-) awareness day. For the last ten years, HAEi and its member organizations worldwide have used 16 May as a focus for raising awareness: not just on the day itself but in the weeks leading up to it. Let’s Take the Next Step [...]
I participated in an interview with Dr. Olga Barrera in Panama for a national newspaper to highlight HAE patients’ situation in the country. In Puerto Rico, I have had several communications with Dr. Rafael Zaragoza, representatives of pharmaceutical companies, lawmakers, and legislative advisers about the reconsideration of the law that would give HAE patients [...]
In the course of December 2020 and January 2021, I held online meetings with patient representatives from Montenegro, Greece, Albania and Bosnia and Herzegovina. Some of the patients wanted to hear details about the vaccines for COVID-19 because they feel insecure about the safety of people with HAE. I have re-shared the link to [...]
From CEO Laura Szutowicz, HAE UK Much to my surprise, I am already writing another report for Global Perspectives. At the time of the last one, we in the UK had come out of lockdown, and there was a gradual return to normal. I was kicking myself, thinking we had decided to make the [...]
From Patient Advocate/Social Media Manager Ianice Viel, US HAEA HAE Research: The US HAEA continues to sponsor, produce, and disseminate scientific information that leads to better care for people with HAE. Some of our recently completed projects are highlighted below. Hereditary Angioedema Primer: The US HAEA joined forces with the prestigious medical journal Allergy [...]
From Chairman Elena Bezbozhnaya, HAE Russia During the challenging time of the COVID-19 pandemic, HAE Russia keeps in touch with patients and supports its members through all available means. In the fall, we have ensured several important events, both online and offline. In early September, when the coronavirus rate slowed down, the School of [...]
From the HAE Canada Team We are kicking off this update with an exciting announcement: Canada now has a representative on the HAE International Youth Advisory Group. We would like to formally introduce Jacob Collins, who lives on Canada’s west coast, in beautiful British Columbia. We are thrilled a Canadian will help this fantastic [...]
At times it can seem hard to keep track of all that has evolved in and around HAE over the years. Here is an overview – at least when it comes to the development of HAE International. 2002 Alarmed at the potential consequences of [...]
From Regional Patient Advocate Natasa Angjeleska I have participated in Takeda’s External Stakeholder meeting on 13 October 2020 upon invitation from the Head of the Takeda representative office in Belgrade, Aleksandar Bjelski. I was one of two patient representatives invited to speak about living with HAE, as a caregiver, but also as a patient [...]
From Regional Patient Advocate Jørn Schultz-Boysen Having recently started up the RPA task for DACH and Nordics, I had the pleasure to meet face to face with Lucia Schauf of HAE Germany in September. I should also have met with Adelheid Huemer and Christian Müllner of HAE Austria as well as Helene Saam of [...]
From Regional Patient Advocate Patricia Karani The COVID-19 situation in Sub-Saharan Africa is still the main focus of this region. However, I am taking advantage of any small step I can to move things forward where possible in countries like Zimbabwe, Kenya, Sudan, Nigeria, and Ghana. HAE International was able to raise awareness in [...]
From Regional Patient Advocate Javier Santana During the month of December, we are hosting another webinar in Spanish with Dr. Rafael Zaragoza on HAE and COVID-19 in order to update the HAE community from the region on the latest medical information. We expect this event will be well attended. We are also excited that [...]
From Regional Patient Advocate Maria Ferron Mauritania: Our new HAE International Poster has been sent for translation to the only contact we currently have in the country. This poster can be quite helpful to localize possible HAE patients as we are not in contact with any yet. Spain: HAE Spain (AEDAF) had their annual [...]
Welcome to the 2020 HAEi Virtual Regional Workshop Central Eastern Europe & Benelux 2020 HAEi Virtual Regional Workshop Central Eastern Europe & Benelux The 2020 HAEi Regional Workshop Central Eastern Europe & Benelux goes VIRTUAL It has already become a tradition that [...]